Brain Tumour Research Funding

Siobhain McDonagh Excerpts

Thursday 9th March 2023 Commons Chamber

[Siobhain McDonagh (Mitcham and Morden) (Lab)]

My right hon. Friend refers to the average length of survival as being 18 months. Actually, it is nine months. His figure suggests that everybody completes treatment. Nine months is the life expectancy of somebody diagnosed with glioblastoma.

[Hilary Benn]

I absolutely take my hon. Friend’s point, which reinforces, in all of us, our awareness of just how awful this diagnosis is, and it is the answer to the question that every person who receives such a diagnosis asks their doctor: “How long have I got?” Eight or nine months is no time at all.

Dr Matt Williams, a clinical oncologist, is quoted in the report:

“Every week I have to tell patients that there is nothing more we can offer. I have now been a consultant for 10 years and these conversations are the same now as when I started.”

That is why a brain tumour is a devastating diagnosis. A patient quoted in the report says:

“It’s devastating and living with a time bomb in your head.”

That is a very good description of what it must feel like. In those circumstances, what do patients and loved ones want? What we would all want is to make sure that we are doing everything we possibly can to try to change that.

--- Later in debate ---

[Siobhain McDonagh (Mitcham and Morden) (Lab)]

I crave the indulgence of the House for the speech that I am about to make.

On 27 November 2021, my beautiful, unique, tough, resilient, successful sister collapsed in front of me and had a series of fits. Five hours later, in University College Hospital, two doctors named Henry told me that they suspected that she had a brain tumour, but as this was the NHS, MRI scans were not done at the weekend, so they could not confirm their diagnosis. On Wednesday, when I stepped on to her ward, she demanded—and everybody here who knows her will be able to hear her say it—that I ask the ward doctor to come and speak to her. She said, “It’s bad, Siobhain, because he can’t look at me.” And it was.

For the woman who had run Labour’s only two consecutive successful general election campaigns, and achieved her ultimate ambition to see two full-term Labour Governments, the diagnosis was of a glioblastoma. All her toughness evaporated, and there was my little sister with a diagnosis that meant that she might have nine months left—a condition for which there was no cure, for which treatment had not made progress in over 30 years. Just before Christmas, she had the tumours removed by two amazing female surgeons, Róisín Finn and Anna Miserocchi at the National Hospital for Neurology and Neurosurgery, but this was post Brexit, so there were not enough nurses to keep all the operating theatres open, and Margaret’s operation was cancelled three times. I leave it to Members to guess my reaction to that, and how we got that operation in the end.

The best piece of advice I have ever received in my life, and I have received many bits of good advice, was from the clinical nurse specialist. When we asked her where Margaret should go for post-operative treatment— St George’s, down the road from where we live; the Royal Marsden, around the corner; or to stay at University College—Róisín said, “We have Professor Paul Mulholland, and he is the best. He is the best in the UK, and he is the best in Europe.” I want to confirm to the House that he is the best. He is why Margaret is still alive.

What you get when you have your tumour removed, if you live that long—many people do not—is six weeks’ radiotherapy, followed by six months’ chemotherapy with a drug called temozolomide. That drug was introduced in 2005, and since then there have been no variations to the gold-standard treatment in our NHS, so when you read articles such as the one in The Times on Monday, telling us all how successful cancer treatment in the UK is—how 85% of people with a breast cancer diagnosis, 55% of people with a bowel cancer diagnosis, and 98% of people with a prostate cancer diagnosis will get to live for 10 years—do not believe that it is the same for brain cancer. The Times may have chosen a brain as the photograph for the top of the article, but those statistics do not apply.

Margaret had her treatment in early new year 2022; like so many, she could not go through with it—the treatment would have killed her. At that point, where do you go? There were no alternatives. It is not that there are a few trials: there are no trials, and there is nowhere to go. So, like so many of us who are lucky enough to have friends and family and access to money, we looked to the private sector and international travel. Margaret has been on a course of treatment with nivolumab, a Bristol Myers Squibb drug that was seen to be unsuccessful in the treatment of brain cancer, and Avastin, and has been going monthly to Düsseldorf, Germany for four days. That might seem an easy thing to do, but taking a seriously ill person on an aeroplane to a hotel, with no access to healthcare and no emergency services, would be foolhardy unless there was nothing else in this country. There was, and is, nothing.

The help that we received from Dr Sahinbas and his wife, who runs their small clinic in Germany, with hyperthermic treatment was amazing. Their kindness was overwhelming, but there were times when I thought that I would not be able to get Margaret on the plane—that somebody would stop her because she was so unwell. There was one night when I stayed and stared at her, because I did not think she was going to make it through the night, and how would I explain that to anybody?

By June 2022, Margaret had a scan, and they could not see the tumour. When I asked Dr Mulholland, “Is this normal for this treatment?”, he said, “Normal? I have never tried this on anybody before.” Nobody has ever had this drug so early in their treatment or at the quantity that Margaret has had it, or at the same time as hyperthermia therapy. Those who know about Margaret’s experience have come to me and sought support from Dr Mulholland because there is nothing else. The number that the NHS is currently forsaking and, for the lucky people who can get the funds to do it, abandoning to international travel is nothing short of a complete and utter national scandal. I wonder what my mum who came here in 1947 to train as part of the first generation of NHS nurses from Ireland would say about the NHS abandoning her daughter.

But things can be different. Things can be better—maybe not today, maybe not tomorrow, maybe not next year, and maybe not within Margaret’s lifetime—and they can be different if we want them to be different. I ask the Minister to please not give the NHS or the cancer research charities any more money until they guarantee that at least 200 sufferers every year get access to a trial—that would be 1,000 patients over the lifetime of a Parliament—because with those trials we can begin to understand what works and what does not.

The Minister should give no more money to the NHS trainers until they commit that every young doctor training to be a medical oncologist has to go through a course on brain tumour. At the moment, there is no compulsory training. The reason why there is nobody on those wards and nobody doing the work is that we are training nobody, and we are training nobody because nobody is required to do the course, and it was like that 15 years ago with melanoma. Some 15 years ago, the survival rates were so poor, but somebody came up with the idea that immunotherapy would be successful, and today we see successful survival rates equivalent to the best in any discipline. We also see young doctors wanting to take on the specialism, because it is exciting, there is hope, there is a future and there are alternatives.

Who in their right mind today would become a medical oncologist in glioblastoma? There is no hope, no future, no trials—nothing. It would have to be someone with the belligerence and tenacity of my sister Margaret, and we have found that person in Paul Mulholland, but there needs to be more Pauls and more determination. We must have access to trials for 200 people and the training of medical oncologists, and we must require the pharmaceutical industry—because we will make no progress without it—to trial every drug that gets licensed to deal with tumours on those with brain tumours, so that there is access to existing drugs that can be repurposed.

I am sorry about the time I have taken for this speech, but I want to tell the House that when I go to bed tonight I will keep my ear open for Margaret to hear her call my name, I will get up and I will go into her room, and it may be that she is asleep and I have imagined that she has called me. I accept that. That is my duty. It is what I have learned from my family, from my faith and from my politics. I accept that. That is my duty. It is what I have learned from my family, what I have learned from my faith, and what I have learned from my politics. I accept my responsibility. All that I want is for the NHS, cancer research charities, and pharmaceutical companies to stand up and accept their responsibility, and give some hope to the 3,200 people who will be diagnosed with a glioblastoma this year.

[Mr Deputy Speaker (Mr Nigel Evans)]

That was a very brave speech, Siobhain. And please send our love from Parliament to Margaret.

--- Later in debate ---

[The Minister for Health and Secondary Care (Will Quince)]

First, let me congratulate my hon. Friend the Member for St Ives (Derek Thomas) on securing this debate on a very important topic and for his personal commitment to making progress on this devastating condition. Like him, I pay tribute to the life and work of Tessa Jowell, who, after a long and distinguished career on these Benches, left a legacy that lives on in the numerous initiatives that the Government are supporting.

I also thank hon. Members from across the House for their valuable interventions and comments today— I will come to them in turn—especially in regard to NIHR support for cancer research, the Tessa Jowell Brain Cancer Mission and our commitment across Government to cancer research funding.

Before I turn to the contributions of individual Members, I want to touch on Government commitments, particularly the Baroness Tessa Jowell Brain Cancer Mission. As my hon. Friend the Member for St Ives said, in 2018 the Government announced funding through the NIHR of £40 million over five years for brain tumour research as part of the brain cancer mission. I would like to draw on Tessa’s words. She said that this

“is not about politics but about patients and the community of carers who love and support them. It is…about the NHS but it is not just about money. It is about the power of kindness”.—[Official Report, House of Lords, 25 January 2018; Vol. 788, c. 1169.]

We are grateful to all those who have provided care and support and who have campaigned for better funding for research, and to those involved in brain tumour research for keeping this nation at the forefront of scientific progress. Research, as many Members have set out this afternoon, remains key to progress. There are many challenges with brain tumour research, some of which have been set out today, but as Tessa implored us, we must not leave this in the “too difficult” box. I will now try to address the comments made by hon. Members in turn.

My hon. Friend the Member for St Ives rightly praised the work of the Realf family, whose petition led to significant funding and focus on brain tumour research. He rightly pushes us to ensure that we are spending the allocated funding on brain tumour research, and he asks us to look at the NIHR’s processes to make them more user-friendly. He followed the report in calling for a brain cancer champion, as did the right hon. Member for Hayes and Harlington (John McDonnell). I want us to be world leading in this sphere, so I will take that point away and ask the Secretary of State. Indeed, my hon. Friend the Member for St Ives might pick this up and run with it himself, given how he runs the APPG and given this superb report.

I will come back to research more generally a little later, but my hon. Friend talked about applications and the application process. As part of the £40 million fund, all the applications assessed as fundable in that open competition have been funded—in total, that is 13 of 95 applications, and a further three are under consideration. I very much encourage researchers to make those applications. We have to get it right, and I will come back to this later.

My hon. Friend touched on funding committees, which play a hugely important role. We have a diverse range of applications for funding and, as a result, there is a broad range of expertise sitting on the panels. The panels may or may not include people who specialise in brain tumour research. I understand the frustration of applicants, and work is already being done by the Tessa Jowell Brain Cancer Mission, through customised workshops and the work of researchers, to enable people to resubmit their funding applications after understanding why they were not successful.

The right hon. Member for Leeds Central (Hilary Benn) rightly praised the work of Brain Tumour Research. I understand his point about not only patients but consultants hearing the phrase, “There is nothing more I can offer or do for you.” We have to do what we can to change that. He rightly says the brain is a very complex organ, which is why treatment and research are so complicated—I will come back to this point if I have time.

My hon. Friend the Member for Scunthorpe (Holly Mumby-Croft) talked about the heartbreaking experience of David. She asked us simply to get the money into the hands of researchers, and I wish it were that simple. Understandably, this does not sit in the hands of Ministers—it would be totally inappropriate if it did. It sits in the hands of clinicians and experts in this field, but I completely understand the sense of urgency with which she makes the point. We spend around £1.3 billion a year on research, and we have to ensure that it is well spent and leads to research that gets treatments and drugs to patients in this country and around the globe.

The hon. Member for Mitcham and Morden (Siobhain McDonagh) gave the most powerful testimony, sharing her sister Margaret’s experience. I am so very sorry to hear of her experience, which must have been very difficult to share. She spoke about cancer diagnosis and treatment, and we have come on so much, but I recognise that this is not universal across all cancer types and that we have much more to do.

The hon. Lady made a very strong case for clinical trials, and she spoke about the need to travel abroad. We cannot do every clinical trial in the UK, although I sometimes wish we could. There is global competition, but I give her my personal assurance that clinical trials are high on my agenda. I want to make sure that our United Kingdom has the best environment for clinical trials. We have launched the O’Shaughnessy review, and we are working with the NHS, the MHRA and NICE. We are trying to encourage patients through the NHS app to sign up to clinical trials. Of course, raising awareness of clinical trials is a huge area of interest and importance for me.

[Siobhain McDonagh]

I completely understand all the work that the Minister and everybody else is doing, but can he explain why it is not happening?

[Will Quince]

I will specifically address brain tumour research, but clinical trials are taking place in acute trusts across the country. There are fewer clinical trials in this area than I would want, and I will explain why a little later. Finally, I pass on my very best wishes to Margaret.

My hon. Friend the Member for Buckingham (Greg Smith) urges us to act on the report’s recommendations, and he is right to do so. I will look at those recommendations very carefully. He touched on the £40 million, and I will come on to that a little later. He also mentioned childhood brain tumours. There is insufficient time to go into the level of detail I would want to on that subject, and I would be happy to meet him and members of the all-party group to discuss what more we can do on childhood brain tumours and the treatment thereof.

The right hon. Member for Hayes and Harlington talked about the courage and fortitude of families. He shared Sonya’s experience and talked about the importance of support for loved ones, and I will raise those issues with my counterparts at the Department for Work and Pensions. My hon. Friend the Member for Meon Valley (Mrs Drummond) shared the impact on the Fearn family, which outlines why it is so important that we get this right. She touched on the importance of awareness, and how in this area there is a high prevalence of late presentation and late diagnosis, and the impact that has on prognosis.

The hon. Member for Luton North (Sarah Owen) told Amani’s story and how the family had to fundraise to travel to take part in an international clinical trial. Of course, I send my condolences to Amani’s family, and I would be happy to meet Khuram and Yasmin to discuss this further. The hon. Lady asked where the money allocated is. It sits within NIHR and remains there; funding is allocated and it awaits suitable, fundable applications, so that is where we need to focus our efforts.

My hon. Friend the Member for Great Grimsby (Lia Nici) rightly praised the work of the all-party group, which probably makes this the right time to turn to the report, “Pathway to a Cure”. I very much welcome the group’s investigation and report. I acknowledge the problems and issues that have been identified. Let me be clear: we want to fund more high-quality research to accelerate the field and help patients. The report makes a number of recommendations for actions by research funding agencies, such as the MRC and NIHR, on co-ordinating action and making funding available. Crucially, the report is clear that to make advances in brain tumour research we must bring together diverse disciplines. There are detailed recommendations here, with potentially far-reaching consequences, and the MRC, NIHR and I will consider responses and come back to colleagues.

Members from across the House will understand that this debate is not necessarily the place for a detailed response to the report and every recommendation. Notwithstanding the strong case made today on the importance of research, we have to tread carefully. This is not the first condition into which I have probed and asked lots of questions about why we have not been funding all the research, and why funding is sitting unallocated, given the bids that have come in. We have to tread carefully because the clinicians and scientists rightly push back, saying that lowering the scientific quality bar for access to scarce public research funds, which would not be won in open competition, is unlikely ultimately to be a good solution. We must get this right, and at the heart of that is ensuring that we support applicants to make high-quality bids, which will then translate into funding awards. Of course, we want to fund the best science to help patients and ensure that our country remains at the forefront of scientific progress.

All Members, from across the House, rightly mentioned the crucial importance of research in tackling cancer. A theme of the report and the debate has been that of co-ordinating action along the translational pathway; that starts with the fundamental science and early translation, typically supported by the MRC, and goes through to the applied health and care research, which is funded by the NIHR. Working with the NIHR, the MRC has developed guidance and toolkits for teams to help them to navigate the scheme that is best suited to their proposal. However, I have heard today that we are not giving the right support to those making applications, and where applications are rejected we need to look into that further.